ME/CFS Primer for Clinical Practitioners

As seems to be the status quo at the CDC with regards to ME/CFS -- the right hand apparently doesn't know what the right hand is doing, much less what the left hand is doing.

I felt a bit blind-sided by the 2nd day chair (and other government officials) insisting that the case definition needs to be created by a professional organization like the American Association of Rheumatologists (or whatever it is) "so that we have buy in." Geez, we don't even have enough doctors who know anything about ME/CFS. A major professional society associated with ME/CFS with thousands of members is many years out still.

And the idea that we should use Primary Care Physicians as a source for a group to create a case definition is laughable -- as is the idea that somehow the PCPs will be the ones to do basic management of ME/CFS patients.

First, the illness is way too complicated, with immune, neurological, and endocrine symptoms as well as multiple chronic infections. PCPs can't handle all that. Second, they sure as hell don't want to manage us. We are far, far too complicated and time-consuming. In my experience, and I think it's a common experience, the PCPs who didn't dismiss me as a head-case told me flat out that I would need to get a specialist because they couldn't handle the illness.

I was empathizing strongly with Dr Fletcher's apparent frustration with the lack of awareness of many committee members about the state of medicine with regards to ME/CFS.

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I completely degree. The total clueless-ness became very apparent to me at that point. The recommendation really should be two sentences: Your patient has a medical problem that is too complex for you to understand and properly deal with. Please refer to the enclosed sheet for a referral to a recommended specialist.

I completely degree. The total clueless-ness became very apparent to me at that point. The recommendation really should be two sentences: Your patient has a medical problem that is too complex for you to understand and properly deal with. Please refer to the enclosed sheet for a referral to a recommended specialist.

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However, that's not really practical if there are only about a dozen specialists to refer to.

It took me less than an hour for me to read and understand the whole document. The index may look overwhelming but it isn't a long document and not hard to read, and it's well-organised so easy to go to the bit you need to find - remembering the details isn't important, it's a good first reference too.

The problem is that PCPs/GPs have had this part of their education missing. They know at least as much as the contents of this primer about any other major condition, and this is knowledge that all of them should have, even if it weren't the case that the most realistic short-term option for getting better care for ME/CFS patients is currently better education of PCPs/GPs. But another issue that did come out of the CFSAC discussion is the strategic importance of having a professional body for ME/CFS specialists, so perhaps the formation of such a body is another important aim.

The problem is that PCPs/GPs have had this part of their education missing. They know at least as much as the contents of this primer about any other major condition, and this is knowledge that all of them should have, even if it weren't the case that the most realistic short-term option for getting better care for ME/CFS patients is currently better education of PCPs/GPs. But another issue that did come out of the CFSAC discussion is the strategic importance of having a professional body for ME/CFS specialists, so perhaps the formation of such a body is another important aim.

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I will be giving the primer to all those involved in my care - including my pharmacist. It is up to them if they chose to read it. I'll contribute the effort to print it. My PCP is my ME/CFS specialist. But, I am not sure if he is aware of this primer, so I'll print off a copy for him too.

I fully agree that the creation of a professional body for ME/CFS specialists is strategically very important, not just for the political strength it offers but also for the very practical needs of better clinical practice and data sharing.

However, that's not really practical if there are only about a dozen specialists to refer to.

It took me less than an hour for me to read and understand the whole document. The index may look overwhelming but it isn't a long document and not hard to read, and it's well-organised so easy to go to the bit you need to find - remembering the details isn't important, it's a good first reference too.

The problem is that PCPs/GPs have had this part of their education missing. They know at least as much as the contents of this primer about any other major condition, and this is knowledge that all of them should have, even if it weren't the case that the most realistic short-term option for getting better care for ME/CFS patients is currently better education of PCPs/GPs. But another issue that did come out of the CFSAC discussion is the strategic importance of having a professional body for ME/CFS specialists, so perhaps the formation of such a body is another important aim.

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You are more optimistic than I. I am surprised to see that you think reading that primer will instantly make the PCP with 10 minutes allotted to their patient into an expert in what to do next.

One of the things that everyone should consider is the danger of "doing something". Everybody will have a different opinion and situation but overall caution really needs to be applied to what treatments are applied to ME. My biggest piece of advice for a long time has been: If you want to deal with this, get to a specialist. Don't bother with your local PCP and don't take drugs and maybe even supplements without due diligence. I stand by that. YMMV...

I'd also like to add that there are always borderline cases. I really don't think that a PCP seeing ME for the first time has the proper knowledge to discern borderline cases, which almost certainly occur far more often in an ill defined disease like ME. So far I've seen 2 of the top 5 ME docs in the world and they're still not certain what to do with me.

I gave the ME/CFS Primer to my PCP just 2 weeks ago. She looked at it, gasped audibly, and asked, "Is there a summary page?"

As good as it is (and I have a few reservations about it), it's far longer than most PCPs want to (or have the time to) read -- especially if they think they have only one patient with this not-very-serious illness. At present, I'm letting my ME/CFS specialist manage my illness. When I need my PCP to do something, I'm figuring I'll have to bring in my own copy of the Primer with the relevant passage highlighted to justify my request. I'm certainly not relying on my PCP to read and remember all the info contained in the Primer.

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it would need to be formalized into a CME program to justify making it worthwile for most PCPs

You are more optimistic than I. I am surprised to see that you think reading that primer will instantly make the PCP with 10 minutes allotted to their patient into an expert in what to do next.

One of the things that everyone should consider is the danger of "doing something". Everybody will have a different opinion and situation but overall caution really needs to be applied to what treatments are applied to ME. My biggest piece of advice for a long time has been: If you want to deal with this, get to a specialist. Don't bother with your local PCP and don't take drugs and maybe even supplements without due diligence. I stand by that. YMMV...

I'd also like to add that there are always borderline cases. I really don't think that a PCP seeing ME for the first time has the proper knowledge to discern borderline cases, which almost certainly occur far more often in an ill defined disease like ME. So far I've seen 2 of the top 5 ME docs in the world and they're still not certain what to do with me.

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I think the point of the primer is that so they understand: okay, this is a serious disease with some actual pathologies and now (like Mark mentioned) they could get a basic grasp of it like they do with other important diseases.

The primer is not meant to teach them how to discern borderline cases and to teach complexities of care.

The meaning of the word "primer" is basic introduction like kindergarten (or, on a college level, 100 or 101 course). This is not a 500, 600, etc. level course, and it was not written as such.

It was written to take people from "don't know what CFS is and don't care; the patient is probably exaggerating or somatizing" to "oh, there's an actual disease, it's complex, and I should consider (if it's a mild enough case that I can manage myself) looking into whether these things might be helpful, or referring to those specialties, based on details of particular case"

I think the point of the primer is that so they understand: okay, this is a serious disease with some actual pathologies and now (like Mark mentioned) they could get a basic grasp of it like they do with other important diseases.

The primer is not meant to teach them how to discern borderline cases and to teach complexities of care.

The meaning of the word "primer" is basic introduction like kindergarten (or, on a college level, 100 or 101 course). This is not a 500, 600, etc. level course, and it was not written as such.

It was written to take people from "don't know what CFS is and don't care; the patient is probably exaggerating or somatizing" to "oh, there's an actual disease, it's complex, and I should consider (if it's a mild enough case that I can manage myself) looking into whether these things might be helpful, or referring to those specialties, based on details of particular case"

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I was being tongue and cheek. I know what a "primer" is thank you very much. Please go back to the original comment. My point was awkward and somewhat of non-sequitor. Mark probably also mis-read it and then I made it worse by responding to his post.

The comment is in reference to SOC's comment of the committee suggesting that primary physicians assist in coming up with the case definition, which is absurd. I was agreeing with the absurdity of asking the PCPs to assist in a case definition on the one hand while trying to educate them on the other. I was also agreeing that I don't think the average PCP can adequately deal with the "average" ME patient, mostly because of the contraints of the current health care system. Ten minutes just doesn't cut it.

the committee suggesting that primary physicians assist in coming up with the case definition, which is absurd. I was agreeing with the absurdity of asking the PCPs to assist in a case definition on the one hand while trying to educate them on the other. I was also agreeing that I don't think the average PCP can adequately deal with the "average" ME patient, mostly because of the contraints of the current health care system. Ten minutes just doesn't cut it.

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Yes, it's quite absurd to invite in doctors from anywhere, PCPs or specialists, doesn't matter, to help make a case definition or anything like that, because nobody has the faintest idea what this is. Except basically a handful of doctors.

And yes, it would be ideal to have a team of specialists for an ME patients, but PCPs are generally expected to coordinate care among the several specialists their patient has. Sometimes a specialist will act in this function (for example, a nephrologist for a kidney failure patient, because they also have specific needs that most PCPs, nurses, etc. are unaware of), but it's unclear what specialty could be our 'home base' at this point in time. More on that in a post on Now that CFSAC's over, what should we do? (starting in third para).

One of the things that everyone should consider is the danger of "doing something". Everybody will have a different opinion and situation but overall caution really needs to be applied to what treatments are applied to ME. My biggest piece of advice for a long time has been: If you want to deal with this, get to a specialist. Don't bother with your local PCP and don't take drugs and maybe even supplements without due diligence. I stand by that. YMMV...
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The problem most people have is they don't have reasonable access to a "ME/CFS specialist". In Canada, there are very few doctors who could be called "ME/CFS Specialists". I am lucky that there are at least two within an hours drive of me. It is actually hard to use that term when an accredited and recognized ME/CFS specialist body does not exist. Then there is the financial factor which limits access to "ME/CFS Specialists". Most people who have ME/CFS do not have the money to travel to be attended by one or they don't have insurance to pay for the care and treatment. In Canada we have public health insurance. However, it too only covers medical visits and a portion of our drugs. If you don't have extended medical insurance (private), then you are out of luck. I shudder to think what the cost would be to me for the drugs and treatment I have received had I not had extended medical insurance.

Thus, it is abundantly clear to me that the first steps are to get this primer distributed as widely as possible as much for awareness of ME/CFS. Once we have that awareness amongst a majority of the medical profession (not just doctors), then we will have the momentum and basic understanding of the importance of having a common diagnosis and treatment program, of investing more in research, and of creating a professional body of ME/CFS specialists. We can leave it up to the professionals and government. We need to push this forward. It has been over a year since my province announced a new treatment and investigation centre for ME/CFS, FB and Lyme and they still haven't even hired the medical director yet. If we who are sick with our family and friends don't push the government and professionals forward, no one else will do it.

According Dr. Belay, the CDC's CFS Toolkit was designed to fill a vacuum. With the publication of the ME/CFS Primer, he suggested that the CDC might be prepared to take down its Toolkit voluntarily (no need for a recommendation from CFSAC).

With the use of the CCC in the ME/CFS Primer and the publication of the ME-ICC, might the CDC similarly be prepared to take down its Fukuda case-definition were CFSAC to make this recommendation?

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Government agencies don't like to have the CFSAC give specific recommendations that criticize their actions. In May 2011, the CFSAC came real close to passing a recommendation that the CDC website be changed from the recommendations of an ad hoc committee they were forming. Real quick, Dr. Michael Miller, the CDC rep then, said that CDC is opening to working with CFSAC ad hoc committee to see what changes can be made. We had not gotten the openness to this suggestion before. Yet, here, suddenly they are open to it and even suggesting which CFSAC members should be on it.

We were very concerned that no recommendation was made then, which would be something we could use to hold them accountable. But, we also saw that CFSAC members could pass a resolution at the next meeting if the CDC balked after making the suggestion.

Thankfully, the CDC has been making some changes, lots of them. And most of them good. Not quite far enough. But definitely going in the right direction. Didn't take a recommendation from the CFSAC, just a threat of one. Now, as you see, Dr. Belay said might not need to make a recommendation to take toolkit down as it may not be needed now. Good CFSAC didn't accept that. They made the recommendation anyway. Now, it's on record. Sebelius will see it. And note that the CDC's work is being rejected by the federally appointed experts in the field. Not good.

Again, this is why patient advocacy is so important. The patient united voice motivates CFSAC members to make recommendations, which then put pressure on government agencies so it doesn't go on public record that they are not doing a good job.

Also, remember, the Fukuda is a research definition. I spoke to a CDC person in the audience. I told her I did not get to mention in the testimony that the primary care physicians go to the CDC website for info. But, the Fukuda is the only criteria on there. Yet, it is a research definition. So, without a clinical one on there, they will use the Fukuda.

And after I said that to her, when they started talking definitions, I really liked that Dr. Susan Levine, right out of the gate, said that there needs to be two: research one, which is very narrow; and clinical one, which is more broad.

Absolutely.

Another point is that, as they discussed, this disease is so complex it needs a specialist. Yet, there is no specialty for this disease. It is a multi-system disease. In my opinion, I think we need a new specialty to include "multi-system dysfunction diseases" or "neuro-endocrine-immune diseases." How does a new specialty get started? Have no clue. Would have to involve medical schools.

In the mean time, maybe we need to work on the neurologists as it is classified as a neurological disease in the WHO ICD-10.

However, that's not really practical if there are only about a dozen specialists to refer to.

It took me less than an hour for me to read and understand the whole document. The index may look overwhelming but it isn't a long document and not hard to read, and it's well-organised so easy to go to the bit you need to find - remembering the details isn't important, it's a good first reference too.

The problem is that PCPs/GPs have had this part of their education missing. They know at least as much as the contents of this primer about any other major condition, and this is knowledge that all of them should have, even if it weren't the case that the most realistic short-term option for getting better care for ME/CFS patients is currently better education of PCPs/GPs. But another issue that did come out of the CFSAC discussion is the strategic importance of having a professional body for ME/CFS specialists, so perhaps the formation of such a body is another important aim.

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I agree. Once you start it, it isn't as long as it seems. Also, I think GPs, most of them, want more information on this disease. I think they know they know nothing and hate to see the next one come into the office, because it makes them feel weak and inadequate. I also hope that as they start to read it, they get interested. "I didn't know that," I hope they say often as they are compelled to keep reading. I took it to mine, and I took her straight to the activity level chart. My doctor is not keeping up with CFS per se. But she is open to experimental stuff. And she has other "chronic fatigue" patients, as she calls them.

I'm on and off this forum and haven't read the whole thread but two quick comments:

1) The scientific/ professional group for ME/CFS for the US and internationally is the IACFS/ME which produced the Primer. Many of the top researchers/ clinicians in the US and abroad are or have been members -- Klimas (former President), Natelson, Peterson (lifetime member), Lapp, Bateman, Jason, etc. However the organization has not had the prominence of something like the American College of Rheumatology and should educate the gov't more about its role.

2) A good primary care doc should be able to handle the basics of complex illnesses; primary care docs coordinate care for patients with diagnoses that are just as complex as ME/CFS. A patient may for example have high blood pressure, diabetes, cancer, heart disease, and high cholesterol. A neurologist may advise the primary on the MS and an oncologist on the cancer but it is the job of a good primary care doc to, for example, make sure the drugs prescribed by one doc don't interfere with the other and help each patient individually prioritize their different issues. Time is an issue I agree and generalists, at least in the US, need to be compensated for coordination of care; for example, minor surgical procedures that take less time say than the 45 minutes need to talk to specialists, call and explain the situation to a patient, and arrange for follow-up are compensated while the latter is not.

Having trained at a top primary care (and specialty) program in the US, that was what I was taught so I was dismayed to hear Dr. Vincent at CFSAC turf ME/CFS to specialists. I think you need a strong primary supported by good specialists to help rule out other conditions and handle some issues but a good primary should be able to handle 85-90% of most medical issues. Furthermore, when the specialists run out of answers, some who are less creative give up and the generalist is left to take care of difficult/ non-clear-cut cases. But that could be the difference between where I've trained/ worked vs. Dr. Vincent working at the Mayo Clinic, which is dominated more by specialists.

(FYI, Peterson, Lapp, and Bateman are all generalists by training but became interested in ME/CFS. I believe that Peterson at least still practices general medicine so don't underestimate a well-trained generalist.)

I don't have the reference, but I do remember Dr. Nancy Klimas talking about it at a CFSAC meeting. This is the first time I heard that a research definition is different than a clinical definition. She said the research definition must be very narrow, to make sure your results are looking at the disease and not someone who may have the disease or likely has the disease. She gave the example of AIDS, where they had many narrow specifics of who was used in research when they looked for the biological agent that caused AIDS. Once the biological agent is found in the narrowly defined group, then you have a biomarker that can be used to diagnose others.

The only problem with having a generalist is that we can't expect them to keep up with ME/CFS research because they have to care for so many other diseases. An ME/CFS specialist does. Now, I don't think we should have ME/CFS specialists as a separate specialty. But, we could throw in a few other underserved disease groups, such as MCS, etc. And then we have the new specialty. And these individuals would know the latest on these diseases, because that is their specialty.

Now, let me get my head out of the clouds and back to reality. I am seeing a GP.

I hear (though not yet from any authority) that the CDC must have an “accepted” case definition for our disease on their website. But I can't find one in the case of AIDS. I ask my question in the context of Dr. Grobstein's demand that the CDC abandon its Fukuka and empiric definitions.​

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Hypothetically, could the CDC remove the Fukuda definition from their website in response to Dr. Grobstein's demand? (And if not, why can't I find a case definition for AIDS on their website?)​